Saturday, August 18, 2012

It's hard to believe we are now through our year of firsts without Skylar... We've made it through her birthday and our birthdays, the holidays, mother's day, father's day, and every day in between. Yesterday marked the anniversary of her death - and so we've survived our first whole year with out our sweet girl.

Leading up to the 16th was no fun to say the least. I was tempted to buy myself flowers or a giant bag of m&ms, but settled on two tubs of Blue Bell ice cream - on sale of course :)

Kyle and I both dreaded it as we knew we'd be forced to re-live the most painful moments in our lives. At the beginning of August, we were informed that Skylar's "stone" was completed and in place at her grave. I know this sounds crazy, but it made me cry because the thought of seeing her name with her dates of life set in stone was so permanent. I obviously know she's gone and I will have to wait the rest of my life to see her again... but still.

Kyle and I decided to go up to SC to her grave site and take a break from work to spend the day with each other and see the stone, sit with each other and visit her resting place.

I woke up that morning hoping that I wouldn't wake up. Not in the morbid sense, but I'm not a morning person and I really wanted to just sleep the entire day away so I didn't have to feel the pain. As I laid in bed, I realized it was right around the time Skylar left us and had a good cry. After sitting with Kyle for a bit once I got up, I decided to go out in the garden.

Gardening is my therapy and it allows me to care for things - as if I am still a mom. I haven't been able to do much in the last couple of weeks because of work, but I decided to take the entire day off to be still. Gardening allows me to be quiet. I can sit with my thoughts, ask questions and be still and wait to see if I can hear the answers... All the while I am taking care of plants, seeing things grow and produce fruit (thankfully) and getting my fair share of vitamin D and fresh air.

Lately, I've had lots of butterflies and hummingbirds visiting me in the garden. I've been able to take some photos of them and have enjoyed "getting to know them" as they are now regulars and have their own personalities. It always brightens up my day and makes me think of Skylar when I see them. We always called her our little hummingbird because her heart would beat so fast as her little body tried to function normally and struggled to keep up.

After gardening, we packed some snacks and got ready to leave. I was dragging my feet (and probably frustrating Kyle) but I knew what was to come emotionally and was subconsciously trying to stall. We finally got on the road and made the two-hour drive. When we pulled up, so many things were going through my mind and it was hard to contain it all. We made the hike into the woods to her grave and each step became heavier than the one before.

At the first sight of her stone, the waterfall of tears flowed down my cheeks. It looked so nice yet it was something I never wanted to see in my life. We moved it a little for better placement and pulled up tons of muscadine vines that had claimed the surrounding ground as their own. It was our way of continuing to take care of her as her parents the only way we know how...

Before long, both of my shirt sleeves were soaked with snot and tears. It was nice to have the space to sit with my grief and Kyle's shoulder to cry on. We had a good day together, despite the circumstances.

We thanked God for the opportunity to be Skylar's parents and for the precious time we had with her. As much as I didn't want to leave her grave, I know she's not there and being at her grave doesn't get me any closer to her than here at home. We were filled with a peace and comfort coming home that can only come from God. I really don't know how to explain it so I'm not going to try. We talked on the way home, going through all of the events that followed her death and how we've grown, what we've learned and how we're grateful to be where we are.

If you're in Atlanta and don't have anything to do on the evening of the 18th (today), feel free to come out to the Braves game to support our GA Chapter of Families of SMA (tickets can be purchased here). I am sad to say I can't make it because I will be photographing a separate charity event that I'm involved in with Shutter Sweet Photography throughout the entire weekend, but hope to hear about the great night of baseball and awareness raised.

More events will be happening soon. Stay tuned and thanks for reading! Peace.

Saturday, August 11, 2012

August is SMA Awareness month. It is also the month that SMA took my daughter's life.

Many of you have been following this blog for some time, but for those of you who haven't, let me tell you a little about SMA... For those of you who already know, please share this around to spread awareness! It's going to take the effort of many to fight this horrific disorder.

Spinal Muscular Atrophy is a recessive genetic disorder that does not discriminate. One in 40 people are carriers and one in 6,000 babies are born with it every year - 60-70% of those are born with SMA type 1... the most severe form. Most type 1 babies don't live to see their second birthday. Unfortunately, Skylar was one of those babies. She died just a few months shy of her 2nd birthday.

SMA is caused from a missing SMN1 gene. Without getting to technical, it's responsible for the survival motor neuron protein. Babies with SMA are born without it, but have various numbers of the back up SMN2 protein which contribute to the different types of SMA. Unfortunately, this SMN2 is not enough to sustain normal function of the motor neurons and the muscles start to atrophy. There is no cure. Eventually, babies and children lose the ability to move, swallow and breathe... and then die. It is cruel.

On August 8th and 9th, I had the honor of partnering with Quest Diagnostics to speak at two dinner events for medical professionals to share my story and also push for carrier screening as well as newborn testing for SMA. Most of the time, I can talk about SMA and our story without losing it. However, this month has been an exception.

As we're approaching the year anniversary of losing our daughter, my emotions are everywhere.

On the 8th, I was able to photograph a friend giving birth naturally at home and witness a life entering the world. It was amazing. I hope to share pictures on the Shutter Sweet blog. I was full of excitement, but knowing full well that we're not guaranteed anything - including a healthy child - I prayed for their baby and their family. Everything went well and I left that afternoon in awe of the miracle of life once again. I re-lived my labor and delivery with Skylar. Sadness came over me as I thought about never getting to have that opportunity again, but I was so thankful that I got to experience it once and have a great memory of it.

The family I photographed giving birth that day was closely connected to the family I photographed who lost their baby in the NICU a few years ago and they were on my mind all day. I was sharing in the pain and hurt of the loss of their son while also sharing the joy for this other family who were blessed with a son. After sitting with my emotions for an hour or two, I was on my way to Stockbridge to speak at the first dinner. Needless to say, as soon as I got up to speak, it was a struggle to hold back the tears. I learned my lesson and did not wear mascara to the second dinner in Buckhead the next night.

This month, memories have been flooding my mind and my heart. I think about the various things we did with Skylar before she passed away. I re-live the day we lost her as well as the day we buried her... over and over. I try not to think about it, but this month, it's been hard not to. The weight on my heart is heavy.

I see how far we've come, but I also see how far we have yet to go. It's hard to believe a year has passed without our sweet girl. We've experienced healing and peace, but we've also had to fight against anger and bitterness.

I've tried to keep busy this month and have had some major things going on with work. I helped launch a company called Online Tech Experts with a guy from my church. I designed the website (www.onlinetechexperts.com) and am contracted to run their marketing and PR for a while. It's been exciting. We have over 30 tech experts ready to remotely fix computers, remove viruses, help with email trouble, etc. and have already seen some great responses. Please check it out and share it with people you know who may need computer help!

I've also been busy helping launch a non-profit organization called GoodStars and the fundraising campaign on IndieGoGo to provide job grants to those in need. Their partner, the Starburst8 Initiative, will be launching over 100 privately held companies over the next 5 years to hopefully improve our unemployment rates here in America. They are currently hiring for two companies right now. It's a crazy large scale plan, but it might just work :) I'm excited to see how successful it will be.

I've still be busy with photo shoots, weddings and Shutter Sweet Photography stuff as well. I love my job. I am so happy that I have the opportunity to pursue what I love right now. I would be a lot less happy if I had to go back to corporate America and sit in an office all day, not to mention fight Atlanta traffic. Let's just say I am extremely grateful for Kyle's job and his support!!!

We're doing well all things considered and are thankful for great friends and family. Without the support from those we love and the peace and comfort we've received through our faith, I honestly don't know where we'd be - it's a scary thought.

Despite our heavy hearts, we've been able to enjoy each other's company and grow in our relationship. We're still planning on building our home (we bought some house plans and are waiting for a quote from a builder) and will keep you updated as things progress.

Thank you for your continued support in reading this blog and commenting when you feel like it. I know I'm not alone in suffering and hope that we can all help each other out when the time calls for it. Have a wonderful weekend and please help me spread the word about SMA! Peace.

About Me

I love life. Even when it's not always great, it's better than not having it.

I started this blog as "expecting the unexpected" and didn't even know what was ahead! I was surprised with a pregnancy, delivered a beautiful little girl in Nov. 2009, and was later surprised with a diagnosis of SMA (spinal muscular atrophy) type 1. The Night Shift post in March 2010 is where the SMA journey begins... Our sweet girl went to Heaven on August 16, 2011 and is where Skylar's journey ends; however, ours carries on.